I am a 25 years old male and after years of testing I was finally diagnosed with Kallmans Syndrome. My problem is that I have penis that is very tiny and is only 1 inch when soft and 2.5 inches when erect. I was also born with only one testicle that is small, so I would like to meet anyone with the same problem. I have feeling, as I am the only one on the world with this problem. Are there more males who share my destiny or who could tell me more about Kellmans disease or syndrome?
Loading...
I have a six-month-old son who has x-linked ichthyosis and Kellmans disease. I have been reading this site every day since I found it and have found everyone to be very helpful for cases as we have. I was also wondering if there is anybody out there who knows anything about Kallmans syndrome. Then I found out it is a very rare genetic disorder, caused by a deletion of a gene. This problematic gene is the one, which is found right next to the gene deletion that caused the icthyosis. It could also happen that two are often found together as it happened with my son. I have been having trouble finding other people who are facing this disorder, so I am happy we could talk like this. I could help you telling that X linked ichthyosis is caused by the deficiency of the steroid sulphatase enzyme. Patients with x linked ichthyosis generally have deletions of one gene segment, but recently a few cases with point mutations have also been identified. Genes for Kallmans syndrome, which mean anosmia and hypogonadism are also located at Xp22.3, as genes for ichthyosis.
Loading...
I am 20 weeks pregnant and was just diagnosed as having an sts deletion. They are doing all sorts of testing now for kallmans and other possible deletions. In the meantime, I'm trying to gather whatever information I can on x-linked ichthyosis. For those who have boys with XLI, can you please share your experience with me? Is this something that can lead to an uncomfortable life with my child or is it mild and manageable in most cases? Any information would be appreciated. There is very little out there.
Loading...
I am 20 weeks pregnant and was just diagnosed with an STS deletion. Is there anyone out there with a son with x-linked ichythosis who can give me some information on how manageable the condition is? Is it something that can be unnoticed with treatment? Or is this something my son will suffer with throughout his life? Any information would be helpful. There is very little out there.
Loading...
hi i was diagnosed with kallmans like u my penis the same likeu i have sustanoninj 250 mg every 3weeks do uknow if life span is short due to this cheers/ jeff
Loading...